Saturday, June 5, 2010

The Moon Keeps Going Kaboom

When I was a kid my dad and I used to sing an call and respond song that, near as I know, he made up. My title for it is When the Moon Goes Kaboom. He would sing in his nice clear tenor, "When the moon goes kaboom, will you put it together, put it together, put it together. When the moon goes kaboom will you put it together with me." And I would respond, in my shaky alto, "When the moon goes kaboom, I will put it together, put it together, put it together. When the moon goes kaboom I will put it together with you."

As he declined in ability, I would often think of that song. I would think of it as a commitment that I was failing to meet. I couldn't somehow find a miracle cure for Parkinson's. I couldn't find a miracle cure for his aphasia. I could not find a miracle cure for his dementia. I could not help him pull out of his downward spiral of depression brought on by lost physical and mental ability.

For much of that time, I was taking care of Kid O while my mom was taking care of my dear old Daddio. We would commiserate on caregiving frustrations. My mom would meet Kid O and me for lunch and then off to one of Kid O's Feldenkrais lessons. A busman's holiday for her, and companionship for me. One of the things I struggled with then was how much of a toll my dad's caregiving was taking on my mom. I resented him for wearing her down.

One day Kid O and I were waiting for my mom to join us for lunch. I was alarmed when I saw that she got off a stop past us. I was even more alarmed when I realized that she wasn't walking right. She had had a stroke. I was sure of it. She was titled at a roughly ninety degree angle. I couldn't leave Kid O in her stroller, and so I stood, frozen and silently hoping my mom would not tip over. When we entered the restaurant, it was even more evident that something was wrong. She was disoriented. We had a bite to eat, and I insisted on calling a cab for her. She didn't want to miss Kid O's appointment, but I insisted. I also made her promise to call her doctor as soon as she got home. A few hours later my dad's helper called me to let me know she had called an ambulance for her. I was right. My mom had had a mild stroke.

Over the years I have wondered why I have been meant to learn about neurological problems and brain damage. My paternal grandpa had Parkinson's. My father had Parkinson's. My daughter has severe cerebral palsy. Each one of them had loss of speech, the difference being onset at old age instead of at birth. Regardless of cause it results in a person being largely locked away inside themselves. My dear old Daddio would awaken like the Dormouse in Alice in Wonderland. He'd say something lucid and then drift off again elsewhere. Or sometimes he would communicate something that came from what? Where? Seemed as if he were going places. Perhaps what we call dementia is really nothing more than drifting into another realm.

Many years ago a woman who had been my mentor at work told me that she was concerned about how she was losing vocabulary. I told her she was stressed out and depressed and that is what happens to people who are stressed out and depressed. She was convinced she had early indications of Alzheimer's. Instead she had a malignant pear shaped brain tumor that was pressing on her speech center. The doctor gave her six months to live. She only lasted three. A co-worker and I would visit her at her mother's where she was receiving home hospice care. Two weeks before she died, circumstances prevented my friend from accompanying me. My mentor was already slipping into light comas and losing language. I sat by her bed. She woke up and looked at me. "You are here, but where is the other one," she asked me. I explained to her where "the other one" was. She closed her eyes again. And then she said, "It'll either be bargainzee, bargainzee, bargainzee or bargainzee, bargainzee, bargainzee. You'll see. You'll see." Perhaps some day I will understand what she was trying to tell me. Perhaps she had seen the venner velt, the other world. Or maybe the tumor had overtaken her language center and there wasn't much more to it than that.

Kid O laughs uproariously at some joke. She has no way to share the joke, but that doesn't seem to bother her. How many small ways does her world go kaboom? We can only skim the surface of her thinking. She is always pleased when we get it right. My world goes kaboom every day as I try to figure out how best to help her. Another day. Another failure. Or so it seems. And yet there are moments when it seems like we can really put the kabooming moon back together again. Moments of quiet companionability when it doesn't seem to matter that the world is incrementally falling apart.

One thing that Kid O has taught me is that life is not a tragedy but some absurdist comedy. When I laugh with her, it doesn't matter that I don't get the joke. Just that we laugh. There simply is no answer or great vision. Nothing to set out on a quest for. Maybe I should stop searching for meaning where there is none. And just be. The gods may be crazy, but I don't have to be.

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Much Ado About Me

My life is a series of theater of the absurd vignettes.
I am passionate about education reform or what I call education equality. I am a strong Special Ed advocate. I strongly support dedicated, conscientious educators.